CCSVI Ontario asked Kirsty Duncan for an interview to get her reaction to the announcement of 28 September by the Minister of Health of CCSVI clinical trials and a few other issues that have been hot topics in the MS/CCSVI community. Kirsty graciously consented and the following is that interview.

CCSVI Ontario: What is your reaction to the Minister of Health’s announcement on 28 September regarding the start of clinical trials for CCSVI?

Kirsty Duncan: I’m encouraged that at least a first step has been taken. Up to now we have had only announcements and no timeframe for action, no lead for the trials, so this is encouraging. I am concerned that this is not a Pan-Canadian trial in multi-centres with a large number of patient participants. The country has been miniaturized. There are a number of questions that need to be answered. For example, are the health professionals who will participate in the trials adequately trained and experienced? There is a huge learning curve involved and experienced IRs who are doing the procedure say that it takes 100 or more procedures for them to feel comfortable and to know the ins and outs of the treatment. How will patients be monitored? What are the criteria for determining adverse events? There are many details we don’t know.

CCSVI Ontario:What is your reaction to Dr. Anthony Traboulsee, an MS neurologist, being named as the lead in the clinical trials?

Kirsty Duncan: I have heard from many Canadians, doctors and people with MS, and there is great concern for the potential of negative bias. There is real concern. Frankly, if this is to be a double blinded, trial then all project investigators must be blinded.

CCSVI Ontario: What do you think the impact of the Minister’s announcement will be on the Senate Committee that will begin hearings on Bill S-204 on Thursday, 4 October?

Kirsty Duncan: I had no doubt that there would be an announcement of some sort a week or so before the hearings on Bill S-204. The Minister of Health has been playing politics with people’s lives from the beginning. The Minister went to extraordinary lengths to kill Bill C-280 and it would not surprise me if the aim of the Minister’s 28 September announcement is to limit consideration of Bill S-204 in the Senate.

It is interesting to note, however, that Bill C-280 was deliberately killed in the House but just a few short weeks later Bill S-204 passed second reading in the Senate and was sent to Committee. The Bills are the same; I wrote Bill C-280 but could not table it before the House adjourned in June 2011. Senator Cordy graciously took the bill and tabled it in the Senate.

CCSVI Ontario: What is your reaction to Canadians with CCSVI/MS not being allowed to appear as witnesses in front of the Senate Committee?

Kirsty Duncan: I think it is outrageous. This same Committee heard from people struggling with mental health issues when they discussed mental health; they heard from victims when they discussed crime; why are the voices of Canadians with CCSVI/MS being shut down now? Why do Canadians with CCSVI/MS always have to fight their government and their disease? Why are the people charged with representing them refusing to hear from them?

CCSVI Ontario: We learned today that the Senate Committee has refused to accept Dr. Sandy McDonald as a witness. Dr. McDonald’s CCSVI credentials are without peer in Canada. What is your reaction to this news?

Kirsty Duncan: Again, it is outrageous. Unfortunately, it is not the first time that Dr. McDonald has been deliberately excluded. The CIHR has an “expert” member on its working group on CCSVI who admits he has never seen an MS patient, but Dr. McDonald is excluded from that working group. When did it become the norm for the government to deliberately ignore the most experienced and knowledgeable people? When did it become the norm for the government not to seek the advice and counsel of such people?

CCSVI Ontario: What do you think is going to happen at the Senate Committee hearing on Thursday?

Kirsty Duncan: We all hope that Bill S-204 will get a fair hearing at the Committee. If you recall, when Bill C-280 was being debated, the Minister of Health announced that CIHR had done another review and clinical trials would proceed. That allowed the government to claim that the Bill was requiring action that had already taken place and, therefore, was not necessary.

CCSVI Ontario: Any other thoughts you want to share with us?

Kirsty Duncan: I know everyone has heard me say this many times, but Canadians with MS and their families are my heroes; they inspire me every day. I’m so sorry that they have to fight for their lives and fight their government at the same time. That is just wrong.